Monthly Archives: December 2013

December 29, 2013 · 10:12 pm

Preparing for a new year

As the old year winds down, many of us judge ourselves too harshly. Which new year’s resolutions did we fail to keep? What goals did we come up short on meeting?

And then we go and make new resolutions and goals and start the cycle all over again.

I’ve actually been feeling guilty about my shortcomings this year for awhile now. I’ve always been my harshest critic.

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I’m disappointed that I haven’t been able to build a more lucrative freelance writing career this year, when I’ve been working from home full-time. I have one main writing gig right now, but it doesn’t pay nearly enough to pay the debt I accrued during Mom’s illness last year. The job market is tough, and I have been humbled and educated. So far, I’ve landed a few interviews but no job offers. I hope to be starting 2014 on a positive note because I have a job interview scheduled for the first week of the new year.

As for writing goals, I’ve pretty much met my goal of writing on this blog a couple of times per week. That includes reposting other people’s blogs, which I want to continue to do in the new year. The first year of The Memories Project, I focused on personal memories. This year I focused on awareness and activism. I’m still working on next year’s theme, but my general goal is to focus even more on the hopes, struggles and successes of other families dealing with dementia.

I think where I’m most disappointed is the novel. After Dad died, I had started working on a novel and had a pretty substantial outline developed. I even pitched the concept at a writer’s conference. Then Mom got sick. The agent I pitched the memoir concept to stated that the memoir market is oversaturated and I might want to consider converting my idea to fiction. I’ve had a whole year now to mull a new concept and I still haven’t fully formed a solid new outline, let alone written a complete novel like I had hoped. In 2014, I hope to complete that outline and begin novel writing in earnest.

On a positive note, I’ve written several poems and short stories and submitted them for publication. Have any of them been published? No, but I did get an anecdote about my mom included in an anthology, so I’m counting that as a publication credit!

I’m also disappointed that I didn’t do more to actively support Alzheimer’s awareness. I missed the local walk and I didn’t volunteer at a local nursing home like I wanted to. I did faithfully write to my congresspersons when Alzheimer’s-related funding bills were on the table. I’m also an active member of the Alzheimer’s Prevention Registry.

What are you most proud of this year and what do you plan on working on next year?

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December 24, 2013 · 11:46 pm

Missing Jim During the Most Wonderful Time of the Year

We can all relate to this sentiment as dementia caregivers. May your family have a peaceful and loving holiday.

alzga's avatar Georgia Chapter Blog

I miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what…

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December 20, 2013 · 11:05 am

Two years since Dad died

It’s hard to believe that today marks the second anniversary of my father’s death. My grief is still pretty raw, yet the person I was back then seems like such a distant memory. So much has happened, both good and bad in the two years since his death that it almost seems like another lifetime.

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The weather is dreary, much like the day he died, though at least there’s not a cold rain. In fact, it’s unseasonably mild, making it ideal walking weather. So I took a long walk on my neighborhood’s walking trail, something Dad would have enjoyed. Then I stopped for coffee, another of Dad’s favorite things. I made a donation to the tribute fund for Dad through the Alzheimer’s Association. I’m dedicating the day to writing about Dad and promoting Alzheimer’s awareness. I’m listening to the Bing Crosby channel on Pandora while I write. They are playing so many of Dad’s favorite songs.

One of my favorite photos.

One of my favorite photos.

I’ve also started a Tumblr to vent about the rocky road of caregiving. Feel free to check it out, it’s called The Caregiver Vent. Warning, because it is a vent, it is uncensored so occasionally profanity is used. If you’re on Tumblr, let me know.

What I’ve learned over the last couple of years is that it is the effort we make in taking care of our loved ones that matters more than the results. Even the most skilled caregiver in the world cannot clear the confusion of a dementia patient. Those with dementia may not recognize their family caregivers. What it comes down to is you being able to live comfortably with the actions you take as a caregiver. You will make mistakes, we all do. Just try to avoid making poor decisions that will haunt you. And above all, be forgiving. Of others, and of yourself. I’m still working on that last one …

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December 13, 2013 · 10:41 am

The gift of guilt

I’ve been thinking a lot about guilt lately. I guess it started around Thanksgiving time. I reflected on this time last year, and how upset and frankly selfish I was, when I saw that Mom was sick again and knew I was going to be stuck in New Mexico performing Caregiving, Round 2 instead of being home with my family. I think I was just burnt out from the past several months, spending all summer and fall tending to Mom’s needs. By November of last year, I desperately wanted a return to normalcy, but I didn’t get it. It didn’t help that Mom felt lousy and was in a fighting mood.

gift

Fortunately for Mom, she has been able to wash all of these bad memories from her mind. Sometimes I resent her for not remembering all of the ugly things she said or did, but then I realize that it would do me good if I could also cleanse myself of these toxic thoughts. Mom has apologized and says often what an amazing daughter I am and how much she loves me, so our relationship is fine. It’s me that needs fixing now.

I also still harbor guilt about not coming to Mom’s aid sooner, the first time she was sick. I knew almost from the get-go that it was probably cancer. Mom was doing all of the right things, going to the doctors, but she lives in a small town and they were taking their sweet time in determining a diagnosis. In the meantime, I called Mom ever day, great, but she was getting sicker and weaker with every passing day. I had a new job that I wasn’t entirely thrilled with, so I didn’t even have work as an excuse. I just didn’t think I could handle another parent being sick so soon after Dad’s passing, which was just six months prior. So I waited three weeks before finally visiting her. I shudder to think if I had waited a week, even days longer.

If Mom’s cancer had been diagnosed sooner, her surgery may not have been as complex and she probably would have been treated in a hospital near her home versus being transferred over an hour away. I could have stayed at Mom’s condo for free instead of all of those nights in hotel rooms, so I wouldn’t be saddled with so much credit card debt now. Maybe she would have recovered quicker and I would not have had to quit my job (a year later and I still have not been able to find full-time employment again).

But then I think about the positives of the situation. First, if Mom had recovered quicker in the hospital, she may never have developed blood clots. It was an unfortunate complication, but if it hadn’t happened, I would not have taken seriously my 23 & Me genetic testing results that says I have a 60% higher risk of blood clots than the average person. Now if I land in the hospital for an extended amount of time, I will demand preventative measures to reduce my risk. This new found knowledge could potentially save my life! (As an aside, I think it is ridiculous that the FDA is trying to shut down 23 & Me’s genetic testing kits. All they offer is information, which they already indicate may not be 100% accurate. It is up to the user to decide how to proceed with that information.)

Another positive: If Mom had recovered quicker from her first surgery, her oncologist stated she would have started her on chemo. This would have been a disaster. When Mom was just starting to feel better and getting her strength back, she would have been knocked back down again. So far, she is doing well without the harsh followup treatment. (They found three polyps during her colonoscopy exam; results will be in on Monday.)

And yes, I’m still grappling with not being there for Dad during that last month of his life. I know all I can do is share my experiences and try to help others find the light as they make their way through the murky, treacherous swamp that caregivers must wade through.

How do you cope with caregiver’s guilt?

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December 8, 2013 · 8:11 pm

When My World Became All Things Alzheimer’s » Alzheimer’s Association | Blog

A moving blog post about being a family caregiver for someone with younger-onset Alzheimer’s disease. As this post suggests, we as caregivers must recognize the difficult journey ahead, but we should also try to build something positive while on that hard road.

jackfussellacrosstheland's avatarAcross the Land 2013

http://blog.alz.org/when-my-world-became-all-things-alzheimers/

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December 1, 2013 · 12:40 pm

Wandering man with Alzheimer’s mistaken for intruder and killed

In my local newspaper there was a sad story about a man with Alzheimer’s who wandered away in the middle of the night and walked a few miles from his home. He ended up at the front door of someone’s house at around 4 a.m., where he proceeded to ring the doorbell multiple times and turned the doorknob. The residents, who had just moved into the home recently, were understandably freaked out and did the right thing by calling 911. But then the male in the house did exactly the wrong thing. He stepped outside with a gun and when he saw the approaching figure, who was now in the yard, he told the person to stop. The person did not obey his orders and kept coming towards him. The resident shot the man in the yard and killed him.

crime tape

Once the resident discovered that the intruder was actually an elderly man with advanced Alzheimer’s, he felt great remorse. Of course, the family of the man with Alzheimer’s also have to live with the violent and senseless way their loved one died. The police have not charged the man with gun yet, saying while it was foolish to go outside, he did not break any laws.

It’s a sad case all around but one that I unfortunately can see happening more in the future. It is easy for those who have never cared for a loved one with Alzheimer’s to criticize the family for allowing him to escape into the cold night, but we know how difficult it is to keep watch over someone with dementia 24/7. And those with Alzheimer’s may not be cooperative and act odd, even violent, scaring a stranger into taking drastic measures in order to protect themselves. Anti-gun advocates will want to blame weapons in the home, but it still goes back to the person and how they react in a situation.

I think about the several times my dad wandered off and how he could have ended up like this gentleman. It’s a sobering lesson for all of us.

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